I was invited by Janet Porter, COO of Dana Farber to teach about patient decision making at Harvard. The course is HSPH Marketing Course. This graduate level course has 30 students in it. They come from all over the world to earn their MHA in the School of Public Health. The first two weeks of the course focused on products, pricing, promotion - overview of the basics of marketing. The second week of the course really focused on market research. How market research is designed, conducted, used in strategic decision-making.

The intention is to discuss the way consumers make decisions about healthcare.

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Mr. Dinmore who is Andy's teacher invited me to his classroom for an interview about Mexico last Friday.

I had a lot of fun!

Andy's second grade classmates asked a lot of good questions.

Today I received thank you notes from the students and some of them say:

"Aztec stadium must look huge! I did not know Mexico is sinking" - Madison
"I did not now about the earthquake.  like that you told us that some people eat lizard. I like the flag." - Noah
"Thank you for coming, I didnt know that Andy's Mom came from a City near a rain forest" - Michael
"It was funny when Mr. Dinmore made a joke about your wife grew up in a tribe" - Jake
"I remember they put bugs in their tortillas. They don't wear sombreros" - Elcie
"I never new that on the flag there is a eagle on a cactus eating a serpent. When I flip it over I can't find the frog." - Nina
"In 1985 when the earthquake came, did your home collapse?" - Alanna
"Are there still cowboys in Mexico?" - Allegra
"I did not see the frog looking in a mirror, but the flag still looks good" - Alex
"I thought it was cool that some native tribes people wore ribbons on hats to tell was not married." - Grady
"Do you think its going to sink more?" - Mikayla
"I was surprised that Mexican people eat ants and grasshopers." - Emma
"When the earthquake happen did you see the ground moving? Did you ever taste a habanero? Was it really hot? Did it burn your mouth?" - Charlie
"Why is the Aztec people so popular? Is the eagle on the flag on a dollar? Mr. Trevino do most people like hot peppers? - Chidinma
"You know when you told us that if you flip over the Mexico flag you see a frog looking in a mirror? I couldn't find it." - Conor
"I was sick the day you came in. I heard that your talk was great!. Can you tell me if time is the same in Mexico? - Maya
"I thought it was interesting that they put ants in tortillas! I thought it was funny that thousands of people lined up outside McDonald's when it first opened!" - Chris
"My favorite thing was learning that in Mrs. Trevino's tribe if you were a single you wore a sombrero with ribbons. If you were married it didnt have ribbons." Charlotte
"You are really lucky that you were born in one of the biggest cities in the world!" - Avi
"I did not know that you make tortillas that way. I thought sombreros were much bigger." Billy
"I loved that hat." - CJ
"I liked the tortilla maker" - Thomas
"I never new that people eat ants in burritos." Alex
"Now I know so much about Mexico." Clara
"Those hats are so cool. P.S. Mexico is really cool" - Makenzie


By popular demand here is the eagle perched upon a cactus devouring a snake. And the frog in front of the mirror:

Andy didnt have cancer but he did receive a lot of medications including chemo. He has trouble with numbers and math.

This talk is very helpful. 

Advocating For Your Child's Learning Needs: Through Treatment and Beyond

This program featured Daniel Armstrong, PhD, professor & associate chair, Department of Pediatrics, director, Mailman Center for Child Development, associate chief of staff, Holtz Children's Hospital at the University of Miami, Jackson Memorial Medical Center, director, University of Miami Sickle Cell Center, Miami, Florida.

This program was part of our Focus on Childhood Cancers Educational Series and was sponsored by The Leukemia and Lymphoma Society.

Ronald Green who's book I'm reading right now "Babies by Design" talked at NPR today, the title of the program was: Genetically Engineering a 'Perfect' Baby

I tried to call in but it was too late..

I left a note at the blog:

My 4 year old daughter is a savior sibling a.k.a. designer baby. I like to call her "One Fit Savior".
Specialists from a clinic in Chicago helped us select an embryo (6 cells) that had compatibility with my son who was born with a terminal disease. After birth she donated umbilical cord and bone marrow stem cells for her brother. He had a stem cell bone marrow transplant 3 and a half years ago and after a very long and difficult recovery, he's cured. Treatments like this one will help us find a cure for many diseases like diabetes, sickle cell anemia, parkinson's, alzheimer's, spinal cord injury...

Researchers need help. Theres a lot to be done regarding stem cell research.

We will be able to swap healthy cells for damaged ones with cells that are a perfect match for a patient's own. This will restore health and life to patients now without hope.

This will cure currently incurable diseases.

This will revolutionize medicine.

Blog here.

Marathon Monday is 5 days away!

Gregg Edelstein is running teamed up with Andy.

There are 225 dedicated runners who will be running for Children's Hospital this year.

Fundraising; surpassed the $1 million mark. Goal $1.6 million!

"There are such things as miracles, so we are going to hope for that,"

"I'm 47, and the fertility clinics in Vancouver can't justify going through the procedure knowing that my chances are nil ... for this procedure working,"

"They pointed to the stats. They don't even perform in vitro on women who are past the age of 45, let alone for pre-implantation genetic diagnosis on a woman who is 47 years old,"

"The technology is there. To us, we need to use it to save our son,"
"There are a few ethical questions, but when you are trying to save another child, to us anyway, there is not a question,"

Story here.

For a boy with leukemia. Mother is 47.

I wonder why they make it public at this stage...

B.C. couple put faith in 'saviour sibling'

Battle to save son's life raises ethical and moral concerns

VANCOUVER - Parents Mike and Pam Obadia are opting for desperate -- and controversial -- measures to boost the survival odds of their son, who has been in a five-year battle with leukemia.

"Though we've been told our chances are nil and it will cost us $30,000, we will try anything to save our son," Mr. Obadia said. "We will also try naturally to have a child and take our chances that it will be a match."

Story here.

More here and here.

"Savior Sibling" or "Designer Baby"?

Link

From his Dad blog:

Saturday 6:30: Giovanni is coming strong: The vent is off tomorrow. He's still sedated but further taking command of his respiratory system, his vent numbers ranging from high 5's and over 10, and that's enough to remove the vent. His femoral line is being pulled, his cultures are negatve ruling out any infections including pneumonia, and his white cell count is going down. He's opening his eyes for the 1st time in a week and holding our hands, but he keeps breaking through the sedation so they have to keep increasing the morphine, which means extra days in the hospital to reduce the meds and minimize  withdrawals. We are very happy parents and if Giovanni keeps making these gains he'll be home next week. That which does not kill us only makes us stronger." Nietzsche
 More here

I had a 'saviour sibling' to cure my desperately ill son - but now I've found out my newborn daughter can't save his life

 

Donna Zammit's first, tearful words to her husband Thomas after their baby daughter was born six weeks ago were: "I did this for Jamie."

Strange words, but then baby Donatella was conceived with the primary intention of her becoming a "saviour sibling" to her nine-year-old brother Jamie, who suffers from the rare genetic blood disorder Fanconi anaemia.

Their unbridled optimism that Donatella might provide their son with a bone marrow transplant and in doing so save his life has been cruelly short-lived.

Two weeks ago the Zammits received the devastating phone call from Great Ormond Street hospital in London to say that tests on Donatella's umbilical cord blood had revealed she was not a perfect tissue match for her brother.

Link

From Giovanni's Dad blog:

Giovanni is once again in a struggle for life, yesterday was yet another battle he has fought in his war for life and I can only hope that the master of his destiny is friend and not foe. Giovanni is currently stable but he is in serious condition and could die. A prospect that destroys me yet one I must acknowledge for that is our reality. As I sit here contemplating the events of yesterday, realizing how close my boy neared death, I'm completely exhausted yet I cannot sleep. Instead, I think about the days he's blessed my life. the smiles shined on my day, and the happiness he's showered upon my life. I've faced death, many times, and known no fear like that of watching one's child descend the road towards death versus life.

 

More here

 

After a few days away we remain anxious and exhausted. Simons symptoms seemed to have gotton worse. I wonder if taking him off of any meds was a good idea. That is the problem with all of this everyone is guessing and noone can tell us the right thing to do to help him.

 

More here.